Introduction: Cloaca is a congenital condition where a female's vagina, urinary tract, and
anus merge into a single channel, affecting approximately 1 in 50,000 births (Wood et al.,
2019). The condition necessitates early and complex medical interventions, with the
potential for lifelong implications for bowel, urinary, and gynaecological health. Despite the
enduring and complex nature of the condition, there is limited qualitative research on the
experiences of individuals with cloaca and the psychosocial impacts, particularly as they
transition from adolescence to adulthood. Therefore, this study focuses on the individual
experience of young adults living with cloaca to build a more comprehensive understanding
of the potential psychosocial impacts.
Method: One-to-one interviews were conducted with nine participants. Eight of the
participants had personal experience of cloaca (aged between 16-40 at interview) and one
participant was a caregiver. A qualitative design was used, underpinned by Constructivist
Grounded Theory.
Results: Three themes emerged from the data. The first, sense of the bodily self, reveals
how treatment and symptom management can impact individuals' perceptions of their
bodies and the development of a sexual identity. The second, medical complexity, highlights
the challenges of cloaca's complexity and rarity, impacting interactions with medical
professionals, self-management, and increasing vulnerability to medical anxiety and trauma.
The third, growing up with cloaca, explores how the condition is integrated into identity,
involving the decision to disclose or withhold information. Connecting with others with
cloaca offers comfort, normalisation, and a shared language to understand and discuss
experiences.
Discussion: This study highlights the challenges that young people with cloaca can face
regarding their psychological well-being and identity formation. It proposes a model to
understand how growing up and living with the condition and the experience of treatment
impacts these areas, emphasising the importance of integrating an understanding of patient
and care experiences with other routine clinical outcomes.
